Happy New Year to everyone. I have not been here much during the last couple of months, so I know that I have missed a lot.
For starters, I see that we have sadly increased our membership greatly in the last couple of months. I am very sad to see that. Like you all, I am happy they found HW because of the great support and information to be found here; but I wish they didn’t have to find us in the first place.
I am here to report that I have been officially accepted into the 14-C-0140, A Pilot Study of 18F-DCFBC PET/CT clinical trial at the NIH in Bethesda.
https://clinicaltrials.gov/ct2/show/NCT02190279 I just received my schedule. I will be flying to DC on January 27th. I will have blood work and the F18 Sodium Fluoride Scan (Bones) on the 28th. On the 29th I will have the trial scan. This is a new contrast agent that has shown much promise and rivals the detail of the C-11 scans.
I was selected to the arm of the trial that will give me the same two scans again at 4-6 months.
I last saw my Onco in November and received my Lupron shot. CT scans done at that time showed no progression; in fact they used the term regression. A couple of my lymph nodes had resolved and the others had regressed or showed no signs of developing. This was great news on the home front.
I am due to see my Onco in February and I was able to convince the NIH to get me there and run the scans before that visit. They worked very hard to accommodate me and I am most appreciative. I am a good study subject, they know me because I participated in another diagnostic trial for them in 2011-12.
I wanted to have the scans before my appointment because I wanted all of the info I could get to have conversations with my doc.
I will have been on Lupron for 1 year when I see him and due for my next shot. It is just now beginning to give me a few issues. While I have never had any issue with weight gain (at all, I am still skinny) and almost nothing in the way of hot flashes, I am starting to experience some mental issues. Mostly I am bothered by the fact that I am quick to react to frustration and irritation and lately if something comes into my head it comes out my mouth before I think about
it. Not the best of social skills in society.
Of course my libido has been in the tank for quite a while and I am just now a few months beyond my first year of marriage. Fatigue has not been a factor, but I sure miss the muscles that were lost. The most common of things that I used to do are a struggle at times. Really planning to up the weight training; it started today.
So with all of this in mind, I am hoping for good results and info from the scans. If my PSA has flat-lined or gone down and the scans show further improvement or the absence of anything new, I will be discussing with my Onco, taking a break from Lupron.
Being able to have the scans repeated in 4-6 months will allow me to have info to react if this proves to be a bad decision. Of course if I do this, I will have PSA tests done monthly vs every 3 months.
As always, this is just my way of approaching my own unique journey with Pca and not a recommendation for others. Some would say that 1 year is too short a time to take a break, but there has been much studied and written lately about
intermittent vs continuous HT.
There are many other things that will be available to me in the future, as Lupron is the only thing I have used to date; except for a short 6 months on a trial drug that seemed to have no positive effect for me. I have done better on the Lupron alone.
Just thought I would check in with this info. As always, the information and experiences we all report may help someone else down the line.
2015 is already looking like it will be filled with “Bonus Days” for me,
Sonny
Post Edited (Sonny3) : 1/2/2015 12:56:36 PM (GMT-7)